Jamie Heywood

Co-Founder and Chairman, PatientsLikeMe
Founding Director, ALS Therapy Development Institute

Innovation in healthcare.

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Jamie Heywood is one of the foremost practitioners using technology to transform the future of healthcare. Jamie is a leader in engaging patients, understanding their needs and in applying entrepreneurial smarts and drive to improving the treatment and delivery available to them. He is a passionate believer in transparency and collaboration.

As the founder of PatientsLikeMe — an innovative web community that allows patients to pool their experiences of disease and treatment — Jamie took an innovative, bottom-up approach to both patient support and medical research. Its 250,000+ patients log the progress of their disease in very fine detail, including their treatments and prescriptions, any side effects they experience and much more. This has two radical consequences. First, patients can look at others’ logs and even message each other to learn about the real-world experiences of patients like them. Second, this creates a treasure trove of data about a wide range of illnesses and treatments far beyond what can be captured in traditional clinical studies. It’s a groundbreaking approach that is speeding up the pace of research, democratizing patient data, and improving the dialogue between patients and physicians.

In addition to founding PatientsLikeMe, Jamie is also the founder of ALS Therapy Development Institute (TDI), the world’s first non-profit biotechnology company. He founded the company following his brother Stephen’s diagnosis of ALS (Lou Gehrig’s disease) in 1998. Since then, ALS TDI has broken new ground on many fronts and has become recognized as one of the most promising and innovative research organizations in action. Its achievements include an industrialized therapeutic validation process and one of the world’s leading ALS drug discovery programs. ALS TDI was also the first organization to run an open research program, posting the results of its studies in real time.

Jamie's work has been the subject of His Brother's Keeper, a book by Pulitzer Prize-winning author Jonathan Weiner, and So Much So Fast, a Sundance award-winning documentary. He has also been profiled in The New Yorker and on 60 Minutes.

An MIT engineer, Jamie is an active investor and advisor to startups, companies, and non-profits working to improve the way that biomedical research is conducted.

Jamie is a provocative, passionate, and inspiring speaker.


His Brother's Keeper

One Family's Journey to the Edge of Medicine

Jamie Heywood

Stephen Heywood was twenty-nine years old when he learned that he was dying of ALS — Lou Gehrig's disease. Almost overnight his older brother, Jamie, turned himself into a genetic engineer in a quixotic race to cure the incurable. His Brother's Keeper is a powerful account of their story, as they travel together to the edge of medicine.

The book brings home for all of us the hopes and fears of the new biology. In this dramatic and suspenseful narrative, Jonathan Weiner gives us a remarkable portrait of science and medicine today. We learn about gene therapy, stem cells, brain vaccines, and other novel treatments for such nerve-death diseases as ALS, Alzheimer's, and Parkinson's — diseases that afflict millions, and touch the lives of many more.

"The Heywoods' story taught me many things about the nature of healing in the new millennium," Weiner writes. "They also taught me about what has not changed since the time of the ancients and may never change as long as there are human beings — about what Lucretius calls 'the ever-living wound of love.'"

Harper Perennial; First Edition edition (June 14, 2005)


Jamie tailors each presentation to the needs of his audience and is not limited to the topics we have listed below. These are subjects that have proven valuable to customers in the past and are meant only to suggest his range and interests. Please ask us about any subject that interests you; we are sure that we can accommodate you.

Transparency and measurement in medicine

Making medical research more effective and faster; allocating resources to maximize results

Technology-enabled sharing of information

Patient communities and information access

Recognizing the validity of science

Changing the way we think about health and disease


The big idea my brother inspired | TED

So Much So Fast | Documentary Trailer

About PatientsLikeMe

Transform 2010 | Mayo Clinc


A data drive technology developer conference:
Jamie was a great guy and was good. He is a big thinker, and his level of intelligence was clear. … Jamie was one of the best for driving provocative ideas and pushing people to think differently.

A software and service company for health care organizations:
He was phenomenal, exceptional, very intelligent and articulated his message well. Very inspiring.

A professional organization for chief information officers and other healthcare IT leaders:

  • “Would love to spend a week learning from him”

  • “Jamie was excellent. We’re lucky to have thought-leaders like this in our industry…pushing the envelope”

  • “Excellent, excellent, excellent!”

Perhaps more importantly, they were just wonderful people to work with. They were always humble and gracious, and our Board and VIPs thoroughly enjoyed spending a little time with them both.

A pharmaceutical corporation:
Jamie’s presentation was very well received by everyone. They particularly appreciated his patient-focused perspective and the creativity and innovation represented by the Patients-Like-Me website. And obviously the story of his brother’s struggles with ALS is quite compelling. And, as we had hoped, Jamie provided a unique perspective on the future of pharmaceutical R&D, one quite different from more traditional approaches. He’s a very accomplished speaker and very engaging. Clearly, Jamie was a very good choice for this meeting.